Welcome!

News Feed Item

AFTD Creates Website for Kids Dealing with Rare Dementia

Unique Resource Now Available for Children of a Parent Diagnosed with FTD

PHILADELPHIA, April 23, 2014 /PRNewswire-USNewswire/ -- Isolation, confusion and fear characterize the experience of children in a family where mom or dad has been diagnosed with frontotemporal degeneration (FTD), a rare, young-onset dementia. A new website, www.aftdkidsandteens.org, goes live this month to provide a lifeline for children and teens in affected families.   

AFTD logo.

Olivia Goldring was just 8 years old when her 45-year-old mother was diagnosed with FTD.  The disease had crept up on the family, changing her mother's ability to manage normal daily life involving work, a husband, a home, and two young children.  It was a confusing time for everyone. "She changed," Olivia recalls. "She started looking and acting different than all the other moms. I was upset and embarrassed.  And then I would feel ashamed and guilty because I felt embarrassed. I just didn't know how to deal with all of these emotions."

The AFTD Kids and Teens website provides answers and support for young families who face the challenge of guiding their children through normal stages of maturation—even as one of the parents regresses along the same path. The website provides age-appropriate information about the disease and addresses the changes it brings about in the rhythm of family life: chores, carpools, inviting friends over. Most importantly, it empowers children to cope with the questions and isolation that this journey brings, as they are forced to grow up much faster than their peers.  

A special section of the site titled "Kids (or Teens) Like Me" provides an opportunity for the children to submit poems, artwork, essays or videos to share their story and feelings. And "Get Involved" is a place where they can post pictures and messages about their efforts to spread awareness or raise money to develop the first treatments for this disease. In her self-recorded video Olivia provides affirmation and support for her peers.  "It's not your fault," she says in the video. "It's important to find people—friends, adults—you can talk to so you don't feel alone.  Because you're not alone."

Frontotemporal degeneration, or FTD, is a disease that affects the frontal and temporal lobes of the brain.  It causes changes in behavior and personality, language and/or motor skills and an inevitable deterioration in a person's ability to function.  FTD is often diagnosed in the 40s and 50s, when a person is actively parenting and nearing the height of his or her career. This younger age of onset means that FTD affects families at a much different stage than common types of dementia, like Alzheimer's.  Families like the Goldrings face emotional, financial and support challenges that our current societal resources do not address.

The Association for Frontotemporal Degeneration (AFTD), a 501(c)3  nonprofit based in Philadelphia, is the only national organization devoted to funding research, educating medical professionals and creating unique resources to support families living with FTD.

Photo - http://photos.prnewswire.com/prnh/20130614/DC32224LOGO

SOURCE Association for Frontotemporal Degeneration

More Stories By PR Newswire

Copyright © 2007 PR Newswire. All rights reserved. Republication or redistribution of PRNewswire content is expressly prohibited without the prior written consent of PRNewswire. PRNewswire shall not be liable for any errors or delays in the content, or for any actions taken in reliance thereon.

Latest Stories
Security, data privacy, reliability and regulatory compliance are critical factors when evaluating whether to move business applications from in-house client hosted environments to a cloud platform. In her session at 18th Cloud Expo, Vandana Viswanathan, Associate Director at Cognizant, In this session, will provide an orientation to the five stages required to implement a cloud hosted solution validation strategy.
"Avere Systems is a hybrid cloud solution provider. We have customers that want to use cloud storage and we have customers that want to take advantage of cloud compute," explained Rebecca Thompson, VP of Marketing at Avere Systems, in this SYS-CON.tv interview at 18th Cloud Expo, held June 7-9, 2016, at the Javits Center in New York City, NY.
"We formed Formation several years ago to really address the need for bring complete modernization and software-defined storage to the more classic private cloud marketplace," stated Mark Lewis, Chairman and CEO of Formation Data Systems, in this SYS-CON.tv interview at 18th Cloud Expo, held June 7-9, 2016, at the Javits Center in New York City, NY.
When it comes to cloud computing, the ability to turn massive amounts of compute cores on and off on demand sounds attractive to IT staff, who need to manage peaks and valleys in user activity. With cloud bursting, the majority of the data can stay on premises while tapping into compute from public cloud providers, reducing risk and minimizing need to move large files. In his session at 18th Cloud Expo, Scott Jeschonek, Director of Product Management at Avere Systems, discussed the IT and busin...
There will be new vendors providing applications, middleware, and connected devices to support the thriving IoT ecosystem. This essentially means that electronic device manufacturers will also be in the software business. Many will be new to building embedded software or robust software. This creates an increased importance on software quality, particularly within the Industrial Internet of Things where business-critical applications are becoming dependent on products controlled by software. Qua...
As organizations shift towards IT-as-a-service models, the need for managing and protecting data residing across physical, virtual, and now cloud environments grows with it. Commvault can ensure protection, access and E-Discovery of your data – whether in a private cloud, a Service Provider delivered public cloud, or a hybrid cloud environment – across the heterogeneous enterprise. In his general session at 18th Cloud Expo, Randy De Meno, Chief Technologist - Windows Products and Microsoft Part...
SYS-CON Events has announced today that Roger Strukhoff has been named conference chair of Cloud Expo and @ThingsExpo 2016 Silicon Valley. The 19th Cloud Expo and 6th @ThingsExpo will take place on November 1-3, 2016, at the Santa Clara Convention Center in Santa Clara, CA. "The Internet of Things brings trillions of dollars of opportunity to developers and enterprise IT, no matter how you measure it," stated Roger Strukhoff. "More importantly, it leverages the power of devices and the Interne...
Large scale deployments present unique planning challenges, system commissioning hurdles between IT and OT and demand careful system hand-off orchestration. In his session at @ThingsExpo, Jeff Smith, Senior Director and a founding member of Incenergy, will discuss some of the key tactics to ensure delivery success based on his experience of the last two years deploying Industrial IoT systems across four continents.
Most organizations prioritize data security only after their data has already been compromised. Proactive prevention is important, but how can you accomplish that on a small budget? Learn how the cloud, combined with a defense and in-depth approach, creates efficiencies by transferring and assigning risk. Security requires a multi-defense approach, and an in-house team may only be able to cherry pick from the essential components. In his session at 19th Cloud Expo, Vlad Friedman, CEO/Founder o...
"We host and fully manage cloud data services, whether we store, the data, move the data, or run analytics on the data," stated Kamal Shannak, Senior Development Manager, Cloud Data Services, IBM, in this SYS-CON.tv interview at 18th Cloud Expo, held June 7-9, 2016, at the Javits Center in New York City, NY.
CenturyLink has announced that application server solutions from GENBAND are now available as part of CenturyLink’s Networx contracts. The General Services Administration (GSA)’s Networx program includes the largest telecommunications contract vehicles ever awarded by the federal government. CenturyLink recently secured an extension through spring 2020 of its offerings available to federal government agencies via GSA’s Networx Universal and Enterprise contracts. GENBAND’s EXPERiUS™ Application...
With the proliferation of both SQL and NoSQL databases, organizations can now target specific fit-for-purpose database tools for their different application needs regarding scalability, ease of use, ACID support, etc. Platform as a Service offerings make this even easier now, enabling developers to roll out their own database infrastructure in minutes with minimal management overhead. However, this same amount of flexibility also comes with the challenges of picking the right tool, on the right ...
"We view the cloud not really as a specific technology but as a way of doing business and that way of doing business is transforming the way software, infrastructure and services are being delivered to business," explained Matthew Rosen, CEO and Director at Fusion, in this SYS-CON.tv interview at 18th Cloud Expo, held June 7-9, 2016, at the Javits Center in New York City, NY.
The Internet of Things will challenge the status quo of how IT and development organizations operate. Or will it? Certainly the fog layer of IoT requires special insights about data ontology, security and transactional integrity. But the developmental challenges are the same: People, Process and Platform. In his session at @ThingsExpo, Craig Sproule, CEO of Metavine, demonstrated how to move beyond today's coding paradigm and shared the must-have mindsets for removing complexity from the develo...
DevOps at Cloud Expo – being held November 1-3, 2016, at the Santa Clara Convention Center in Santa Clara, CA – announces that its Call for Papers is open. Born out of proven success in agile development, cloud computing, and process automation, DevOps is a macro trend you cannot afford to miss. From showcase success stories from early adopters and web-scale businesses, DevOps is expanding to organizations of all sizes, including the world's largest enterprises – and delivering real results. Am...